New Agencies Are Clueless About Consumer Directed Personal Assistance Program

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Debbie Bonomo

This is my first time writing for the CDR blog, but I’ve never been one to keep my mouth shut when things are not right. I was one of the first people with disabilities to push for wheelchair accessible buses over two decades ago. Now there’s a new problem affecting me and many of my friends, and it’s time to speak up.

I’m one of the nearly 300 people who were previously getting Consumer Directed Personal Assistance (CDPA) services through CDR. In fact, I chose to use CDR as my CDPA agency for the whole ten years that I’ve used this type of service. I like the fact that CDR is a center for independent living run by people with disabilities. When Monroe County took away CDR’s contract to be a CDPA agency, Maggie Brooks said that we could get the same services from other agencies. I very much doubted that an agency run by non-disabled people could or would offer the same quality of services that I was used to. It would be like a women’s services agency run by men. But I selected another agency and gave them a try.

On the day of the November 8 deadline to start with the new agency, the agency that I selected called me to say that they were not willing to hire one of my three attendants, the one I’ve employed for two years who has been assisting me from 9:00 p.m. to midnight. When I first met with the new agency, I told them that one of my attendants had a decade old criminal record that would come up on a background check. Years later, she had been referred by the County welfare reform program to work in the CDPA program, and a friend of mine in the program who hired her then had recommended her to me. She worked out great.

But at the last minute, on the last day before CDR’s contract was over, the new agency told me that they were going to overrule my decision to keep this good attendant. And they had no one to assist me to get to bed that night, or the next or the next, continuing to this day. They say they will provide attendants already to interview and hire. I met one person that came for my interview eager to start. When I followed up, to confirm her status, the attendant failed to return my calls. When I reported this to the agency, I was told: “Oh really, we’ll have to look into it.” To this day, after repeated efforts to get information and support from my new agency, I have yet to receive the help I requested. I’ve had to press upon family members to come to my home and help me, but this can’t continue much longer.

I thought this was the type of “neglect” that the County accused CDR of committing. But the truth is that CDR carried out its responsibilities in the program by letting me make my own choice of who to hire. CDR never overruled my hiring decision – that’s the whole point of consumer directed services. But when my new agency not only overrules my hiring decision, my decision to hire someone that was originally referred to the program by the County itself, and then leaves me without coverage, the County does nothing.

Overruling my hiring decision is not the only problem with this new agency.

They’ve told my attendants that they cannot give me my medications. This is true for traditional home care, but not true for consumer directed services. Apparently my new agency hasn’t read the state directives about the program.

The new agency is requiring my “plan of care” under the program to be posted on my refrigerator. Excuse me, but my attendants are not the only people who come to my house, and the rest don’t have any business seeing my plan of care. That violates my privacy and I’m pretty sure it violates federal HIPAA law.

The new agency is also requiring my attendants to write down and submit a list of the tasks they’ve performed for me. Excuse me again, but I am the supervisor of my attendants, not some nurse or social worker at the agency. That’s what consumer directed services are all about. The County assesses my needs and authorizes the hours of service required to get my needs met, and I take it from there, saving the government the cost of staff to supervise my attendants. Frankly, I also think it’s another invasion of my privacy for my attendant to be telling the agency when I took a shower or used the toilet.

Finally, all these years I’ve been treated as the supervisor of my attendant by everyone involved, including my attendant and CDR. Starting with a new agency, I can understand that there are new forms and procedures, and I’ve tried to learn, cooperate and double-check to get things right. But when a problem came up with my attendant’s timesheet, the new agency waited until after the work day to call my attendant at her home to discuss this, and never called me as the supervisor.

The bottom line is that the new agency is clueless about how to run a consumer directed personal assistance program, so they’re just running it like traditional home care. They are violating my rights and privacy, overruling my legitimate decisions, taking over my responsibilities and doing a poor job of it, stressing my family and leaving my needs unmet. The contrast with CDR is like night and day. It’s time for the County to let me choose CDR as my agency again, or for the NYS Dept. of Health to step in and give me back the Consumer Directed services that have been my ticket to freedom and work all these years.